Monday, July 8, 2013

Amanda had her two year remission date, and I didn't even notice until a few days later.  I never anticipated we could move on with our life and actually forget for a moment about cancer!  Amanda is doing so well. Fatigue, headaches, joint pain, and social adjustments are lingering, but hey, doesn't that describe most of us anyway?  She's turning into a beautiful young woman and brings a smile to the faces in our home every day.  I'm in awe with how blessed we are to have her a part of our life.

 I just read a quote by Richard G. Scott, "Some people are like rocks thrown into a sea of problems.  They are drowned by them.  Be a cork. When submerged in a problem, fight to be free to bob up."   Cancer is a rock - there is no way around it.  There is no way to avoid being submerged.  But there is a way to avoid getting stuck.  Eventually you can bob up again!   Our family has.  It takes time, prayer, and a lot of patience.  But it is obtainable!

I thought I'd close this blog after Make a Wish.  But we are not done with our journey yet.  Once Amanda has hit her 5 year remission she will be "cured."  Every story has an ending - we're not to ours just yet...

Sunday, October 7, 2012

Make A Wish

"It's times like these you learn to live again." - Foo Fighters

I've looked forward to the day I could share this lyric.  It is hard for me to believe how much life has changed and improved for us.   Four years ago our life started falling apart with one life threatening illness after another.   As a family, we feel a real sense of closure to a very difficult chapter in our life.  Make A Wish has made that possible for us.  The experience's we've had have been amazing to us.  Amanda's Phineas and Ferb day was something we will never forget.  What is a day on the job for Disney animators and producers was an amazing behind the scenes experience for us.   We arrived and had a free day to explore LA.  We headed to the beach and roasted.  But it was fun for the kids to just play and have a change of scenery.  The following day we were picked up by a limo and escorted with one of Make A Wish's Ambassadors.  He was very kind to give of his time and knowledge about the media/entertainment industry.  Out of respect for Disney and Make A Wish, I'm not going to post details beyond stating that we met a lot of amazing people that produce Phineas and Ferb, spent hours witnessing how the show is made, and had a wonderful time as a family.  Scott and I didn't realize how much we have come to love the show and share it with our kids.  So much goes into making a single episode.  We will never look at the show the same way.   I am in awe how healing the Make A Wish experience has been.  Amanda has come home so much happier and more confident.  I've spent so many days watching Amanda cry over the last few years that to see an entire day of nothing but ear to ear smiles was precious.  She's doing so much better.  She is so happy right now.  She is making good friends.  She's so bright.  Her physical and emotional health is much better and keeps improving.  She is adored by many people.  Life has improved so much for her.  Thank you Make A Wish and to all those who donate time and money to the organization.  We have truly been touched by our experience!

Wednesday, September 19, 2012

Wishes do come true

We are leaving next week to California to the Disney Studio's to have a Phineas and Ferb day.  We are so excited!!!.  I'll update my facebook account on the trip and share the rest on this blog when we come back.

Wednesday, August 8, 2012

SHHHH....keep a secret

Amanda just completed one full year without chemotherapy and is still in remission!!!

Things are in the works for her through Make-a-Wish.   In fact, I won't say more because we are trying hard not to have anything leak out to her.  All I will say is that things are starting to come together and my next blog should outline some exciting plans.   I told her wish granter it's coming at a very good time.   She just started into counseling.  She's having a lot of headaches, insomnia, and anxiety as she copes with all the changes and difficulties she's had.   Having a wish granted will help in ways that I cannot.    

We attempted a family vacation this summer.  My dad has a saying, "It's a vacation when you go with your spouse.  It's a trip with you go with your kids."  I had a nice "trip" to the coast.  I'm sure it was a grand vacation in Amanda's mind.  It's was wonderful to see her playing in the sand with her siblings.  There was a time when I thought that would never happen again. Scott and I continue to be very grateful for the life of our children. 

Sunday, April 15, 2012

Spring is in the air

Our beautiful daughter!
Make A Wish Easter egg hunt.
Having fun!

Viva La Perry! Amanda celebrated her 11th birthday in style!
Ahhhh. I'm shouting out my sigh of relief after a very chaotic transition in our life. We have settled into our new house and we are very happy with the decision we have made. The move was very hard on our family. I have been exhausted for quite some time now and the kids have been non-stop sick and ornery. But every day gets better as we acclimatize to our new surroundings and get settled.
With a larger yard I've focused on planting fruit shrubs and trees to give them time to take root. I thought of Amanda as the gardener told me to brutally strip down growth and fruit for the first two years to ensure that the roots grow strong. I feel like that's what we've done to her for several years now. Despite harsh pruning I know that we are among a season of strengthening and growth for her while she continues to mend physically and mentally.
Amanda is slowly making friends and adjusting to her new school. Aside from a really bad ear infection the first week of school, she has done really well. I didn't realize she had already done this year's curriculum plus the majority of sixth grade. Her teacher is a bit stumped with how to challenge her. She's missed over a year of school and is still a grade level ahead! She is so smart! So we are focusing our attention on friendships, church involvement, and extra-curricular activities. She is so excited to go to cancer camp, play soccer again, and everything else that so many other kids get to do without realizing it's something to cherish.
Scott and I continue to offer our heartfelt empathy for parents with terminally ill children. I daily think of children on the oncology unit at Primary Children's. There are a lot of kids struggling right now. There are still moments I'm numb as to why my children have been spared. I know the best way to honor this blessing is to love my life, live happily, and cherish what I have. I will admit that the stressful ravages of going through chemotherapy, health problems, and other challenges has left me really tired and worn out. It can be distracting. I suppose that Amanda's not the only one stengthening roots right now!

Sunday, February 26, 2012

Pardon my Absence

Has it really been 4 months since my last post? I'd like to think it was because time was flying. Rather, it was because life turned into pure chaos. The sale of our house fell through at the last minute, we re-listed and averaged showings every day, and the house we want hit some roadblocks. It's been crazy! We sold again and are temporarily with my parents. We are pretty tired and out of sync with all the changes and chaos. We will be moving into our new home next week. Based on the rare circumstances of how everything has played out, we have no doubt that this new home is where we are meant to be. Amanda is having a hard time understanding and adjusting. She will pull through just like she has with everything else she's had to deal with.

Aside from the stress of moving, Amanda really is doing remarkably well. I can hardly believe how healthy she is. I told her doctor that after 3 years I finally have my daughter back. To see her now you couldn't tell what she has been through. She has been in remission for 8 months. Every month gets us closer to the one year mark and greatly increases her odds of a full recovery. Personally, I believe she is cured. I can see such a bright future ahead of her. The fatigue and emotional setbacks are getting better each day. She is so resilient and I am so proud of her for it. We are so blessed to have our children healthy again. I have no doubt that they are a blessing from God and each day I cherish them. It is God's will when we come and when we go. I understand this and know that they are here for a reason. My job now is to better understand the purpose that they have and help them live up to their God given potential. I stand in awe at the blessings God has given me.

The picture at the top is inside the wishing room at Make A Wish. I am convinced that Make A Wish is one of the greatest charitable organizations in existence. I cannot believe the different it is making for Amanda. We went down to their facility and she made her wish for a Phineas and Ferb day. For those of you unfamiliar with the Disney cartoon I highly recommend you watch a few episodes and you will quickly fall in love with Perry the Platypus as she has. This show was our saving grace throughout treatment. She has just about memorized every episode. Even when she was at her worst, Perry would captivate her attention and bring a much needed smile to her face. She has been approved to go down to the Disney studios and it will be up to them how they create her day. If she has her way, they will animate her into the show. When we go is up to Disney, Make A Wish and ultimately funding. Since she started getting involved with the organization I've noticed such a difference with her. She is adjusting to the changes and accepting the past difficulties of her life with much greater ease. Having something to get excited about and getting such special attention has made a big difference for her. Amanda recently met another wish kid, Lizzy, with the same diagnosis and same age. They hit it off instantly. Lizzy had made a wish to have a new bedroom. She appreciated her gift so much that she wanted to give back. So for her birthday, she asked to have a party where everybody donated money for her to give a gift to another wish kid. Amanda was selected as that child. Lizzy purchased over $400.00 of Phineas and Ferb merchandise to give to Amanda. It was a touching experience and Amanda has just cherished the gifts, attention, and feeling that she is cared about. She is handling the current changes in her life so much better because of Make A Wish.

Sunday, November 6, 2011

I am nobody! Who are you?

We are moving on from many things right now. We are moving out of our home at the end of the month. If all goes well we will be living about 5 miles down the road by Christmas. Amanda will be moving out of her gifted and talented program. She has done an amazing job considering her many challenges to keeping up. But it is time to have my children in the same school. We are moving on from fewer medical appointments. Amanda was invited to participate in group therapy for medically involved kids. It felt strange to be back to Primary's after a long 2 month stretch since my last visit. And best of all, we are moving on from cancer. For the first time in three years I can say, I have my daughter back. She looks and acts like herself again. She is happy. She is full of energy. She wants to play. She enjoys every moment that affords her the chance to live life. The remnants of chemotherapy are fading. Her strength is coming back, her coloring is back, the swelling on her face has gone down, she whines less, she laughs more. I can still tell that she is not 100%. But every day we get closer. Compared to her health even two months ago, she has healed so much. I am humbled with tremendous gratitude for the gift of her life that has been granted back to me. We are getting involved in Hope Kids, Make a Wish (still waiting to have her wish granted), Leukemia and Lymphoma Society, and anything else that helps provide a purpose for her and connects her to her cancer in a more positive way. We ventured to Las Vegas last a few weeks ago and had a really good time. It is so nice to be able to get out again.This picture was taken on Labor Day. Compare this to the picture below and notice how much Amanda has grown and how much her face has slimmed down from being off steroids.
This picture shows off a lot of hard work to transform Amanda into Emily Dickinson for her"Images of Greatness" school project. I think she chose Dickinson because she read one of her poems last year and she was really able to relate to Dickinson. The poem is an expression of how she felt about the loneliness and isolation of chemotherapy treatment.

I'm nobody! Who are you?
Are you nobody, too?
Then there's a pair of us — don't tell!
They'd banish us, you know.

How dreary to be somebody!
How public, like a frog
To tell your name the livelong day
To an admiring bog!

-Emily Dickinson